Skip to main content
Erschienen in: Pediatric Cardiology 1/2020

01.11.2019 | Original Article

Early Integration of Palliative Care in Families of Children with Single Ventricle Congenital Heart Defects: A Quality Improvement Project to Enhance Family Support

verfasst von: Jo Ann M. Davis, Alice Bass, Lisa Humphrey, Karen Texter, Amy Garee

Erschienen in: Pediatric Cardiology | Ausgabe 1/2020

Einloggen, um Zugang zu erhalten

Abstract

Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families, pediatric palliative care (PPC) team consults should be routine; however, medical staff are often reluctant to broach the idea of PPC to families. The involvement of PPC for many carries with it an association to end-of-life (EOL) care. Setting the standard of PPC involvement from the time of admission for the first palliative surgery led to increased family support, decreased days to consult, improved acceptance and communication. The purpose of this article is to describe a quality improvement project of early integration of PPC with families of children with SVCHD. Lessons learned will be presented, including the resources needed and the barriers encountered in assimilating PPC into the standard of care for all patients with SVCHD. The single ventricle (SV) and PPC teams collaborated to enhance the support given to SV families. Education was initiated with cardiology and PPC providers to understand the goal of consistent PPC consults beginning after birth for patients with SVCHD. Parents were educated during fetal consultation regarding the involvement of the PPC team. The SV team ensured compliance with the PPC initiative by identifying eligible patients and requesting consult orders from the primary providers. PPC consultation increased significantly over the 40 month study period to nearly 100% compliance for children with SVCHD who are undergoing pre-Fontan surgery. In addition, mean days to consult decreased dramatically during the study to a current average of 3 days into the patient’s hospitalization; the data likely suggest that more PPC consults were routinely ordered versus urgently placed for unexpected complications. Data indicate that patients are being followed by the PPC team at an earlier age and stage in their SV journey which allows for more opportunity to provide meaningful support to these patients and families. The early involvement of the PPC team for children with SV physiology was operationally feasible and was accepted by families, thus allowing PPC providers to establish a therapeutic relationship early in the disease trajectory with the family. It allowed more continuity throughout the SV journey in a proactive fashion rather than a reactive manner.
Literatur
12.
Zurück zum Zitat Baker-Smith CM, Neish SR, Klitzner TS, Beekman RH, Kugler JD, Martin GR, Lannon C, Jenkins KJ, Rosenthal GL (2011) Variation in postoperative care following stage I palliation for single-ventricle patients: a report from the Joint Council on Congenital Heart Disease National Quality Improvement Collaborative. Congenit Heart Dis 6(2):116–127. https://doi.org/10.1111/j.1747-0803.2011.00507.x CrossRefPubMed Baker-Smith CM, Neish SR, Klitzner TS, Beekman RH, Kugler JD, Martin GR, Lannon C, Jenkins KJ, Rosenthal GL (2011) Variation in postoperative care following stage I palliation for single-ventricle patients: a report from the Joint Council on Congenital Heart Disease National Quality Improvement Collaborative. Congenit Heart Dis 6(2):116–127. https://​doi.​org/​10.​1111/​j.​1747-0803.​2011.​00507.​x CrossRefPubMed
14.
Metadaten
Titel
Early Integration of Palliative Care in Families of Children with Single Ventricle Congenital Heart Defects: A Quality Improvement Project to Enhance Family Support
verfasst von
Jo Ann M. Davis
Alice Bass
Lisa Humphrey
Karen Texter
Amy Garee
Publikationsdatum
01.11.2019
Verlag
Springer US
Erschienen in
Pediatric Cardiology / Ausgabe 1/2020
Print ISSN: 0172-0643
Elektronische ISSN: 1432-1971
DOI
https://doi.org/10.1007/s00246-019-02231-y

Weitere Artikel der Ausgabe 1/2020

Pediatric Cardiology 1/2020 Zur Ausgabe

Update Kardiologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.